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#ShowMeTheMummy-Raise Awareness for IBD

One of my favorite IBD advocates and members of my support team, Colitis Ninja started this awareness campaign and I am so excited to participate in it. What you do, is wrap yourself (I would suggest having someone help) up with toilet paper and hold up a sign stating how IBD has affected you, good and bad. You can read more about the actual campaign on her blog www.colitisninja.blogspot.com

I chose to do my photo while getting my infusion. One of my soul sisters was there visiting with me and she helped wrap the toilet paper so my IV didn’t get in the way and took the photos.

IBD took a lot from me. It’s taken a lot of money, from hospital bills to prescriptions to vitamins to infusions to special food. It took my ability to eat anything I wanted any time I wanted. It made me buy diaper cream and prep. H. It took my 26th birthday and made me spend it hooked up to IVs waiting for the all clear to get remicade. It took so much blood I had to get blood transfusions. It took my reliability and made me person who sometimes has to cancel plans because they need to be home close to their bathroom, or they are too exhausted to even try to leave the house. IBD took my emotions and threw them into a blender. It took my muscles, it lowered my blood pressure, lowered my iron levels, and stole my energy. It stole my ability to live a carefree life.Thanks to the infusions I receive every 8 weeks, along with prayer, diet changes and daily yoga, I am as close to remission as I am going to get. And even though I no longer am losing blood (thank God),I still have an autoimmune disease that has no cure. I still fight every day to have as much of a “normal” life as possible. The infusions come with their own side effects, and I experience a lot of hair loss, joint inflammation, and am more susceptible to other diseases and virus because my immune system is lowered.

It’s hard to look at the positive of being diagnosed with IBD. But it has made me stronger than I ever have been before. That saying where you never know how much strength you have until being strong is your only choice? That fully applies here. I know that because I can battle this disease, I can battle anything that comes my way.

Having IBD has also made me re-evaluate relationships in my life, and I can say with a full heart that all of my friendships and relationships are high quality, strong and true. I have some of the greatest friends, am closer with my family, and have found a person who will be by my side while I battle this for the rest of my life. I have weeded out the flakes, and I couldn’t be more grateful for that. I don’t have time or energy for someone who is only going to be around when they need me.

IBD has also given me a dedicated yoga practice. I have learned so much about the mind body connection, and I practice yoga every day to stay in tune with my body and to relieve stress. On days when I can’t seem to get anything right, and my balance is off I can come to my mat for practice and remember when I couldn’t stand up long enough to take a 5 minute shower, or wash my own hair. And I am so proud of myself for how far I’ve come.

This disease has also brought me closer to God. I had a relationship before, but I had never fully experienced the power of prayer. Now I can feel it, and I know, and I talk to God every day. It keeps me grounded and lets me know that there is a bigger plan than all of this. I know that I have a purpose, and that comforts me and guides me.

Another unexpected perk (?) of IBD is the amazing circle of friends on social media and support groups that I have found. I often refer to them as my imaginary friends. I’ve never met anyone in my #IBDfamily personally. But I don’t know how I would have gotten through this disease without their support or encouragement. I am so inspired an encouraged by them, and so grateful for having all of these kind souls as a part of my life. It gave me the idea to spark hope and start this blog. It’s lead me to connections with others that would have never been possible without this diagnosis.

And that brings me to the final thing that IBD has given me. A sense of gratitude. I make it a part of my life every day to note the things I am thankful for. It can be something as simple as a cup of coffee, or an email someone sent today, or a phone call with my dad. Or as big as an IBD sister in the hospital healing. I’m thankful every single day, good or bad. I’m appreciative of what I’ve been given, because I know first hand that it can be taken away at any moment.

IBD is not a joke. It’s not a poop disease. It’s not something to be taken lightly. I wouldn’t wish it on anyone, but I do wish it was more well-known and understood. Do you have IBD, or are you a caregiver for someone fighting the disease? Please share your experience using #showmethemummy. Raise awareness with us.

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7 thoughts on “#ShowMeTheMummy-Raise Awareness for IBD”

You’re absolutely right – IBD is not a joke. But having a sense of humor (which you obviously do) helps a lot, doesn’t it? When I was going through my worst period, before I was hospitalized and eventually found my way to the Remicade, my office colleagues had a running (pardon the pun) joke that if I was seen rushing down they hallway – get the heck out of my way.

Like you, the Remicade has me as close to remission as possible. I wasn’t aware of joint pains being a side-effect – I thought I was developing arthritis (I am 62 so that’s a normal assumption).

Here’s hoping that both of us continue on our relative stable courses. Life is so much easier without flare-ups.

Hi cordeliasmom2012! Having a sense of humor is a great tool for battling any disease. It sure helps! I can totally relate to your office bathroom runs. I would just hold up my hand like please don’t try and stop me to talk right now lol. I’m glad remicade is working well for you! I wish you the best and a flare free life!!